im terrible blogger

sorry this took me so long to write, i've been neglecting this blog oops!
well after 3 months of wearing hearing aid my hearing deterotiate to the point that the sounds come in as vibrationn no sound at all so its offically dead now hah oh well, more reason to get CI in that ear damn it doctor (he wouldnt implant me for dumb reasons)
also I've heard about new nucleus 5 system, at first i hated it and send me into semi-panic mode that i might not be able to get implant for another 5-10 years until next generation after nucleus 5 comes out hopefully better designs, that or beg harder to my surgeon to implant me now this year while freedoms are still used UGH!! but after while i warmed up tiniest bit to the processor itself but still abhor the implant designs itself, come on square metal housing? the top edges causes slight discomfort for me already (its already being successfully treated with nortriptyline meds) now with 4 sharp angles edges, just what i need, more discomfort? why cant they make it tapered from center to edges or make it round? idiot manufracturer, so i dont know what to do just hope the clinical trial goes badly that they change the housing design or comes out with next generation less than 3-5 years or my doctor gives in and implant me right away damn it im back into semi-panic modes so see ya later

Post-Hearing Aid My Thought

So now after fairly sucessful trial with hearing aid I had moderately bit of dizziness woosh sensation in my head at the beginning but it goes away after long while so right now at this moment only FEW sounds trigger that but 80% other sounds that I can get with my residual hearing is fine no problem at all. 

Also one symptoms I dont think I've mentioned before, is achy around implant site sometimes it'll spread down to part of neck and little bit to the back of the head (only implanted side of the neck so left side) but its lways random and goes away after I wake up (18-24 hours)  then its gone and come back whenever without warning I think the reason is that surgeon might've not made it flush to the skull well enough for some reason maybe thin skull or oversensitivity skin/muscles around implant since I have thin skin could be anything,

 Also since I'm migraine sufferer it could be from that. Im trying out few medications to see what relieves migraine and hopefully fix the achy problem. 

I consider it mild most of time and sometimes moderate but never horrible or affect my mood/day. 

So I'm having 2nd thought about getting other ear implanted since I'm worried if I'll get same achy thing and also I dont want to go back disliking the music again because my fiance's all about music so it's not fun when he enjoy the music when I hated it with CI (but hearing aid bring in more bass sounds so now im back enjoying music as long its not too loud)

So we'll see maybe 5-15 years I'll change my mind again who know maybe there'll be longer array to get WHOLE cochlea to get ALL frequencies then I'll get it in a heartbeat (if surgeon will even implant it) but right now I'll wait

Hearing Aid Update

heres the update 

Pro:

* Heavy metal/Rock music sound much better

* More volume control to turn down if too loud (CI volume only lower by 10% difference pfft)

* Hearing more of the low frequency that im missing with CI

* If im tired of loud noise like restaurant, have headache or just want a quiet day but still have some sound I can just take off CI and wear just hearing aid.

* No surgery

* Comfortable , no pain like I have around implant site I get random achy feeling.

* Get some sound input in other ear so no one-sided feeling.  

Con:

* Cant hear the speech sounds clearly, its very muffled and missing sounds

* Not loud enough to match up volume-wise with CI when I want it to

* Feedback! (if I lean my head too close to something like arm of the couch it'll feedback)

* Earmold (plugged up feeling)

* Not covered by insurance (but VR may pay for it so we will see in little while)

* Some sounds sound very weird like light classical music sound like soft feedback ew 

* Increases the tinnitus issues but it doesnt bother me at all (only time it will bother me is if I cry my implanted ear will start ringing loud screaming horrible buzzing if I dont have processor on)

* At the most of time it doesnt work together like it will be CI hearing sounds then switch to hearing aid hearing sounds when different frequencies sounds is occuring all at once, it feel like someone is holding speaker to my ci ear then suddenly move it to my other ear its weird.

Bringing it back from the dead

Ok I'm sure you guys are puzzled by the title of the blog, I'm thinking about bringing back something we all thought it was over and buried.......
Hearing aid!
Well since I know surgeon won't implant my right ear until I speak well so I figured until then I should try hearing aid again since my CI's louder than hearing aid it might equalize the sound input so it don't feel whooshy and feel unbalanced.
I emailed audiologist about it but haven't received an reply yet. I will let you guys know what she said later.
I just want sound coming in right ear, I'm not too worried about speech clarity for right ear since I'm getting it from left.
We will see how that turn out.
Also I found info about recruitment it said good audiologist can work around it like theu does for CI and sensitive spot they turn off or lower one electrode. Same idea with hearing aid and recruitment spot. I should ask about that also I know low frequency make the issue with hearing aid worse and I looked up at oticon sumo dm the one I trial with before CI it said it put all the power toward low frequency (No wonder!) so I can ask to turn it into normal sound amplification or try different one.
Of course I will update on how it goes.
Wish me luck!

Sorry! Wayyyyy overdue update!

Hey everybody!
I'm so sorry for neglecting this blog! I had no idea what to say on here!
Umm what's new with me you might ask?
Well not much really, except I've decided I want to go bilateral for sure but when I asked surgeon about it and he came in room talking to me and I'm like "uhh write it down or slow down please" and he said "oh you don't understand me still?" I'm like "I do understand you but I can't reply by speaking" and he's like "oh you cant talk either?" what? Did he expect that the CI will miraclously restored my ability to listen and speak like hearing person? But anyways he said he want to order AVT therapy and he'll look for therapist that signs and that was 6 months ago! Still haven't heard anything from him ever since.
He said once I can listen and understand spoken language (I think I've came far enough? I can understand like 70-80% of what's being said if I know the subject if its only one person talking at a time toward me so I get extra help with lipreading.) And have ability to speak well (uhh? I think that's too much to ask for) then he will implant my other ear.
And he's saying things like I already got 80% of hearing with 1 implant (I disagree I feel like its 60% and its super annoying having one sided hearing and moving my head to hear something better and louder) and also new thing happened my nonimplanted ear ringing starting to get worse that sometime its so loud that its louder than my hearing with CI on in quiet evironment (only hear ac, water filter from aquarium, clock ticking tv volume on low etc) and if I lean my head against backside of lounge chair sound sounds muffled and quiet and if I sit on couch with my nonimplanted ear facing where tv is I will have hard time hearing tv clearly its frustrating and if I try to turn sensitivity up higher than 5 it'll hurt its too sensitive right now I think its because of my flu I'm having right now so I havent wore it for 2 weeks now and nobody respect my wish to talk little quieter or turn music down so I pop the coil off and in noisy evironment its too loud and I'm barely just starting to pick out few sounds from people at my table talking out of background noise so I rely heavily on lipreading which I sucked at it to start with..... I WANT MY BEAM PROGRAM BACK lol I miss it so much I totally regretted having it removed from my processor (brain fart that day perhaps?)
So I think it will really benefit me having other ear implanted since my nonimplanted ear's my better and most used ear growing up (dominant) it still is I get strong urges of wanting hear out of right side and it been almost a year now!
Plus I want to get rid of my residual hearing to get complete silent no loud screaming ringing in my ear lol.
And hearing in full surround sound not having to turn my head around to get better hearing UGH pain in the a........ butt (younger audience might be looking into this lol)
What do you suggest me to do? Because if he keep this expectation I'll never go bilateral. My mouth just don't cooperate with my brain maybe permament case of adult apraxia? Lol anyways
Also my bubblehead audiologist want me to learn to listen to multiple people talking at once (group setting) since I mastered at listening to one person speaking at a time while knowing the subject lol
Can hearing people even do that?
NO
Dumb!
Way too high of a expectation huh?

sorry late update

Well surgeon said he want me to get AV therapy first and whenever I get handle on speaking and listening skill he will do the other ear. Thats was it. Lol oh well.

Bilateral?

Well I've given this a LOT of an thoughts... heres my list of Pros and Cons. My appointment with surgeon to discuss about going bilateral is on July 9th 4:15 ET.

PROS
* Same design as other implant.
* Work together and sound same.
* SAFE!!!
* Good chance of right ear (dominant ear) doing a LOT better than left ear.
* Music MIGHT sound better.
* Easier time localizing where sound's coming from. (I do so poorly at that LOL)
* Been around for 20 years.
* Do better at listening in noisy evironment.
* Higher score in Speech Discrimination test.
* Extra ear!
* Feeling of balance and full sound experience.
* Low failure rate with freedom implant.
* Familiar design and device.
* Possibility of right ear can tolerate more decibels gain so it have lower decibels in audiogram than my left ear. (lower than 30 db)
* Upgradeable.
* very effective.
* If right ear did become dominant again, it could be good thing. (Doing better job at listening)
* Give my right ear a chance to become useful again.

CONS
* Miss out future new design, technology, stem cells, whatever crazy medical stuff for deafness.
* Possibility of losing the music appreciation for heavy metal and rock.
* Killing the residual hearing.
* Surgery risks.
* Achy incision for long while.
* Possibility of it overpowering my left ear and uses right ear as 'main ear'.
* Wearing heavy processor on both ears.


I'm thinking, since the design of the CI I have now is proved to be safe and effective, I'd rather to have safest technolgy that is very effective over the new fancy technology or medical stuff in the future that will improve hearing, more natural sounds and more depth in hearing.... I'm DEAF! I wouldn't know what is natural as long its clear and understandable I'd think thats natural and normal for me. I Just dont want to have all those scary unknown and unnecessary risks involved with brand new CI design, Its like throwing yourself in the unknown with potential of having all those risks like eyes twitches, overstimulation, failure, ribbon style could accidently slice the cochlea wall? just everything too new and risky in future with no long term study on it or anything. So I'm thinking let get what is available now since its safe plus its upgradeable. so what you think?

Oh hmph...

I decided to put CI back on and put it on 2 for volume and sensitivity yesterday so far no pain or any problems only slight discomfort on incision from the weight of processor thats all so I increased to 5 for both, so far, so good. Look like I only needed an break thats all. I still need new mapping some part of speech sound muffled and I cant hear fire alarm again. so I'll call to makes mapping appointment.
thanks for sending good thoughts for me :-)

Bad News

I haven't update anything since mainly because I was stuck. I didn't experience new sounds, heard people talking behind back or any of miraculous CI moments for a month and half now, and last 2 weeks I haven't wore my CI processor because I'm experiencing sharp pin-prickling sensation inside head if I hear certain sound like heavy metal, long exposure to loud noise, or whatever and few days later the sensitivity seem to increased so even on volume and sensitivity set on 2 it still hurt inside my ear and almost every night when I take CI off on day I wore them when I'm sensitive to sounds I get this headache-like pain located only left side of my head (implanted side) and during those 2 weeks break I get mild aching pain on the incision part that extend over the ear and the magnet spot.

Its extremely frustrating with all those discomfort I've been experiencing I don't know whats going on and on the top of them all my low score on listening test I posted while ago start to take toll on me I'm feeling depressed, stupid and wondering whats wrong with me, why isn't my score as high as all other bloggers I read about having high score on it after 3 months and everything, it just sucks. My surgeon isn't answering my emails, my audiologist took a week to reply and said she want to try put in new mapping in and see if it helps but she don't know about the pain so I'm waiting on surgeon's response in emails. UGH!

I hope it go away and get fixed soon so I can hear again, I dont want to miss the crickets sound everyone heard with CI out, and the fireworks, ocean waves crashing, seagulls, all summer sounds....

My 3 month Result!

Today Result
Word test NO lipreading= 20%

Sentence Test NO lipreading= 4%

Sentence test with lipreading= 79%

Before CI Result
Word test NO lipreading= 0%

Sentence test NO lipreading= 0%

Sentence test with lipreading= 42%


Hello everyone!
I got my 3 months post-activation test result from today on here.
See the blue line its shaped like an table so i got most of it on 30 decibel (yay passed my goal) and only 0-250 and 6000+ is on 40. I got most of the speech banana now whoo-hoo.
Also you notice that my score wasn't high but to me its something! Little improvement is better than none at all! Also my excuse for this score being low is that from losing my CI i had to use my back-up Mini BTE and it doesn't have accessory jack so I Couldn't do any of the rehab material like book on tape to practice listening. But now I got my new CI Processor today and its regular size so now i can use the jack to get back on rehabbing lol.

Skullchick's World

I want to Introduce my brand new blog called Skullchick's World from now and on when i update on anything that dont have to do with cochlear implant will go on there. So add this to your blog rolls.

http://skullchickworld.blogspot.com/

Vlog about CI and deaf community

I apologize if the cationing is bit fast I tried to keep up with the speed lol (I used my camera video instead of webcam, it took sooooo long to upload and its hard to caption so I am sticking to webcam from now and on lol)

Vlog number 2

Its about I quit my job last week

My First Vlog!

Im so sorry I couldnt figure out how to put html code on the blog to show you the vlog grrr but heres the link you can click to go and watch my vlog its 7 minutes long so cook some popcorn and enjoy watching my vlog! its captioned for people thats sign-impaired :-)

CI's offically an success!

I went to crowded bar last night for St. Patrick's Day. At first I was little bit overwhelmed by all noise, music and other people talking loudly I switched to Focused Listening but it didnt work well enough for my preference so I switched to Noise one and I can hear other people talking to me if I try hard enough and I'll understand some by listening and lipreading some as well and I didnt notice till next day that I actually had fun! For first time ever I had fun in hearing event in last almost 4 years now. because before CI I would sit and look down or play with my Sidekick instead of socializing because I was so afraid to ever had any chance of people trying to talk to me because I cant read lips without sound. So I was always extremely bored and feel left out and isolated, and depressed. For some of you loyal reader, you remember how I want CI to get my social life back... Well apparently its BACK! So its an success story! YAY!!!
Now I can't wait to go to other social events!

My Hair

heres my picture of Shaved hair, it been only 2 months. I know it look like its short and sparse, I have fine hair but the length is about an inch long now!

I got Real programs!

My appointment for mapping was couple days ago on the 11th of march, She got rid of raspy program one YAY and tweaked other one and lower volume and now its much much better!!!
Program 1 is plain program for everyday uses.
Program 2 is Noise, for any noisy evironment(ADRO).
Program 3 is Focused Listening, it cancvel out all background noise and only hear sound in front of me (BEAM).
Program 4 is School, its for any building that produce echo like school, cafeteria, mall, gym and etc.

There is couple more unfortunately I only remember Quiet program (whisper).
Coming soon is Music Appreciation Program! Its currently in study/experimental period.

I tried out audiobook, first chapter of Bridge to Terabithia Its surprisely easy with book in front of me! Not much else to update, sorry haha.

I sound like a guy!

I hated my new mapping, program 2 sound so raspy and my voice sound like a guy! Yuck! And program 1 was way too loud! so it was bad mapping ugh cant wait for other one on the 11th to change it!! Lol

Not much else to update I got bridge to teribithia audiobook and lemony snicket series I forgot which one lol but I lost my debit card! so next week when I get new card i'll buy cd player to start practicing listening :-)

That's all folk!

Over and out.

Sorry! Late Update!

*Yesterday I went to Washington DC with my fiance Jason to visit my friend Brady at Galladuet. Anyways we were walking around and when I heard soft sound and I stopped and looked puzzled and asked Jason "what am I hearing?" He replied "Birds" WOW awesome! lol I stopped there and listen to it some more I loved it! and when we walked to reflecting pool there was duck and seagulls in water so I heard quacking and cawing and I have to tell you duck sound soooo funny!!! I laughed everytime they quack haha. And when walking on way to the car and i heard sound and I said "what was that?" he said "train far behind you" I looked behind and wow it look like half mile away!

* Last friday Jason's mother invited Jason's sister Marian and her kids Maggie, 3 and Boe 8 months old. we all were chatting I just sit there quietly listening to them and only caught one word here and there lol they talk so fast! so Jason decided to stop them and asked them to say one word a time to me and they take turn and I got most right! yay! lol and Jason's stepdad Bill tickled Maggie to get her to laugh and Boe too their laugh is so cute and high pitched haha. and When Maggie attempted to talk to me to see if I really can hear her now with my CI and she took long time to want to test it out and see if its true haha she said "picture" and I smiled and she smiled too and say few other word like "gramma" "pop-pop" (naming people in the table lol) it was cute cuz her voice is soooo tiny of course because shes small but its funny to hear the 'smallness' of voice.

* Last thursday, I finally can hear fire alarm!!! I couldn't hear it at all with few programs I had from activation and 1st mapping I was little upset and worried cuz it was reason I got CI is to be able to hear important sound like fire alarm, emergency vehicle siren, baby/child crying, etc And after 2nd mapping with 2 program with all 22 electrodes turned on and my fiance burned something when cooking set alarm off while I was cleaning off table I heard it and I turned to see what it was and jason smiled and said "can you hear it now?" I couldn't stop smiling for like 15 min enjoying the fire alarm sound till they turn it off lol because it was first thing I tried to hear when I discovered that I'm really profoundly deaf and couldn't hear for first 2 week and now I FINALLY CAN!And same day there was big car accident in hwy I can hear cop, fire truck and ambulance sirens before coming in sight!

* I got CI moment last wednesday. It was my 2nd mapping appt. When we were done with mapping both program, we were just talking and she decided to stop signing and kept talking and it was totally unexpected but I actually understood about 85-90% of what she was saying!!!!!! WOW! I almost started to cry in middle of her talking to me (with lipreading and listening same time but to me that's GREAT and my breakthrough moment because whole my life its always fuzzy and only caught half of what person's saying and today WOW!! I'm over the moon right now I never thought I would be able to do that till like 6-12 months later but NOPE yay!!!

New Mapping Update!

Today I got new mapping for both my program, my program have 3 electrodes still turned off but my program 2 have all 22 turned on and both have new loudness and softness level. Its really different now. But so much better, with program 2 I can hear jason deep voice "rumble" its hard to describe but I finally hear it cuz thats his true voice I was so excited! haha

I got CI moment today also, I was at dining room looking out the back door because its snowing outside (isnt it soooo strange??? I got snow when I got out of surgery, I got snow when I got out activation and I got snow when I was done with 2nd mapping appointment!!) anyways I was there and I heard sound and I was thinking maybe its from my cat meowing, heard it again I was like "no, its from there where my fiance is" and 3rd time around I was positive jason's calling my name in laundry room, we're talking about 30 feet in different room! WOW! I went in to look at jason and he said 'good! You heard me!" Yay! lol

Sound List

well I know this is long overdue but here is my sound list that I heard thats new or something I noticed and wrote down on my sidekick notes, theres million other noise but I dont think its important enough to put it down like general noise you know? Anyways here it is.

New/Noticed Sounds
* stomach growling
* stair creaking
* sizzling
* crunch when eating
* scissor clicking
* last 2 string of the guitar plucked
* brushing my hair
* hand rub together
* fire alarm low on battery warning beep
* spongebob squarepant theme song
* music in between scenes
* smacking my lips
* clock ticking
* sidekick keyboard
* computer keyboard
* AC Vent buzzing
* cat clawing the stratch post
* rain
* cell phone ringing
* aquarium filter sound
* sigh
* meowing
* purring (my favorite!)
* chopping veggies
* other person breathing when hugging
* door squeaking
* clothes rubbing against chair
* sniffling
* yawning

Annoying/Horrible sound
* toilet flushing (the WORST!)
* faucet
* clock ticking
* AC vent
* food court of the mall (LOUD)
* people talking so loud
* loud music
* rap music
* paper rustling
* aluminum foil
* aquarium when low on water (filter makes so much racket)
* gun firing sound in video games

Favorite Sound
* cat purring
* techno beat
* cat meowing
* rain
* my fiance saying 'I love you"
* movie sound effects

I'm Engaged!

Guess what everyone???? My longtime boyfriend of 17 months Jason asked me to marry him! Best Valentine's day ever! No plan or detail yet I'm only engaged for 1 day! Ha ha I'm so happy!!!

Picture of my CI!

Activation!

Sorry for the late update my internet wasnt working right last night.
Anyways heres the update, my activation was interesting lol.
first we did beep for program 1 we used number 2 magnet. I cant describe it all but it was interesting, my activation video will say it all. then between break we went out making racket in building lmao. then went back in to makes program 2 beep test. when they turn into live voice OH MY GOD loud buzz it was unbearable at first and I was totally shocked lol. my bf's mom start crying lol aww, and i heard voices and i can pick up some speech right away my audiologist was surprised. And I can say speech sound soooooooooo much better than hearing aid already and I'm only on crude map! and the sound didnt sound robotic or beepy at all it sound sort of like hearing aid but sooo much higher pitched and some tone thats so high that it sound like feedback like my laughter it sound like feedback at first little while then now it sound little less like feedback lol.
look like im already on good start! cant wait to see how much i accomplished after 1 year!

by the way the video wont be on here for while, dont have right software for video and dont have DV cord either and also im totally clueless with this thing haha and also the subtitling the video will be long hard process it got bunch of voices and sign in the mix and its really long and some clip in video blocked the sign and all complicated stuff lol sorry! please be patient it'll be worth it and its really different than all other activation video too!

I heard so much stuff i can't list it all.
but my favorite CI moment so far is I heard spongebob squarepant theme song so super clearly haha i even sang along with it and cc wasnt working right so its amazing! lol
hmm not sure what else to add yet.... i'll update more when i find something to update more about LOL

My Desired Result

I was bored one night so I made this audiogram to let everyone know what my audiogram look like and what I am hoping for. Also if the result of my CI didn't get to my desired result line (pink line) I'm fine with it as long I can hear most speech sound and try to lipread the sound I couldn't hear

Post-Op pictures

today was my post-op appt the surgeon ripped the tapes off fast but painful ouch! so heres my incision without tapes on.

Ahhhhh..............

*sigh* I forgot how good it feel to have clean hair!
Ok so what I did it few days earlier but I was being super careful washing my hair without let any water touch my tape covered incision and ear, I had to wash it cuz my hair was getting super slimy and sticky it was beyond disgusting so I had to do it today not in 3 days later!
Lol well I'm doing great today I started taking Tylenol and it worked, no more Vicodin for me! YAY!
Only experiencing very slight discomfort still, more like tightness, very slight stiff neck if I turn my neck too far and my jaw still dont open all the way and mild headache from stiffness thats all! Nothing too uncomfortable so im almost back to normal self!
The Activation day seem like LONGGGGGG time away from now ugh!
i"ve been trying to stick stuff to my head like refrigerator magnet, metal object and what not and NONE of them stick :-( I just want something to prove myself that I do actually have Implant in my head haha.
I thought being in hospital will hit me that I will have CI and it DIDN'T! So I still don't believe that I have CI and it haven't hit me YET!!! Ooh gosh, so apparently I'm extremely impatient for activation day so when i feel magnet stuck in my head and heard beep... That's when i WILL believe i have CI! ha ha
well I'll update again after Post-op to show off my incision WITHOUT tapes i wonder what he used hmm staples, stitches, glue? hmmm we will see in next post!

Finally an Update

Alright Im finally feeling well enough to come to computer and typed up an update on me.

Heres it goes.

Jan 14th, Monday:

I was sooo busy all day cleaning the house, bedroom, bathroom, washing all laundry, put dishes away, put on clean bed sheets, took care of my 2 fish tanks, packed an overnight bag, everything i needed to do before surgery finally all done then rested just relaxing on couch. then went to bed around 2 pm I was too excited to go sleep so that is why i went to bed so late lol.

Jan 15th, Tuesday:

Woke up at 5:30 am get dressed in lovely pink button-up shirt, black with white polka-dot sweater, maroon aeropostales sweatpant on then waited for jason my boyfriend to get up and then we left to go to hospital around 6:00 am and arrived at hospital at 6:45 got valet parking ooh fancy then went in did paperwork, waiting for couple while then went in pre-op room get IV, questioned about my medical history blah blah blah then finally wheeled to OR room so scary! all tools, bright light, machines, bunch of people scrubbed up and in gown and bunch of stuff on table making me super nervous then anesthesiologist gave me sedative the part i was dreading the most, it worked well calmed my nerves and made me sleepy..... BUT at very last few seconds i couldn't breath at all! i was gagging, gasping for air and then boom next thing i know im in recovery room, i couldn't keep my eyes open for next 3 hours then finally can stay awake when needed they moved me to different room so my boyfriend could come in to see me, my boyfriend told me as soon my name moved from OR room to recovery room on computer screen in waiting room the snowflake fell and then few seconds it started to snow and it was so beautiful i thought it was awesome because i wanted snow and i finally got it and i think its sign that its going to be successful!. I was VERY sleepy keep falling asleep then finally time for me to go home they sent me home early because i was doing so well. arrived home my boyfriend carried me upstairs to my bed and fell asleep! then i don't remember what happened after that haha

jan 16th, Wednesday:

Same things couldnt remember diddly squat i was high on painkiller and keep falling asleep and zoning out, ate pudding, soups and sleeping all day no real pain only very sore throat, stiff neck and super sleepy.

jan 17th, Thursday:

same thing zoning out dont remember much, except started to experience slight pain in where implant is:

got my appetite back around early afternoon i was starving and keep bugging my boyfriend for food haha

jan 18th, friday (today):

so much more alert, less stiff neck, felt sharp pain in implanted side and inside where eardrum is, ate alot of food took medicine, watched movie just relaxing, had good day today. pain's tolerable nothing too severe only discomfort and before the medicine kicked in i had sore jaw, fullness in ear, tender and sore to touch on my head where implant is. that's it. sore throat is almost completely gone today!

I also added few pictures as you can see enjoy them also its slightly gross but it still got tapes on so no big deal. also im not 100% sure but i think the blue marking on my head is where my implant is.

the doctor shaved more than they told me grrr but its not like too horrible though, oh well.

I will add more after post-op appointment to show my incision without tapes on and will add more after activation too to show off my sparkly brand new pink CI!

Finally!

I finally got time for my surgery its at 9 am BUT i have to be there at hospital at 7 am to do paperwork and routine things like going over my medical history blah blah blah then wheel to OR room at 9 am if everything work out perfectly :-) i'm going to stay at hospital overnight so i wont be able to update blog till i feel like i can get up and go to computer lol so hopefully wont be long i dont want keep you on suspense for too long :-P
Wish me luck!

Pre-Op Appt.

Well...
Today i went to Pre-Op all nervous and no appetite because my boyfriend told me there will be physical and blood test there and i hates blood test because I'm under 100 pound and one vial of blood makes me woozy haha.
But turned out I was all nervous for nothing! I didnt need blood or whatever test before the surgery! So I assume they will do that on the surgery day, My surgeon listened to my heart and heard my heart murmur today, usually doctor didn't hear it but today yup but he don't seem to be worried about it he just told me i need to get heart checked up and catch up with my cardiologist after I told him I didn't get any check up in long while (12 years lol). So everything looked good today and I'm good to go!

I'm little nervous about surgery but I'm sure once i entered the room and it hit me and become super nervous and maybe crying lol I don't know we will see!

Also I should be totally fine going under since there's like people with serious or fatal heart problem going under general anesthesia and wake up all fine and mine is just small murmur so its not big deal right?

Just hope sedative or part of anesthesia whatever triggered it work what it supposed to this time around and makes me calm down and relaxed a bit instead of the opposite effect and makes it worse! last time it was crazy my legs was so shaky and my heart rate was super fast at one point it reached 140 bpm! (beats per min) and set alarm off!

just hope things work out smoothly and going under with no problem just get calm, sleepy then passed out and wake up, NO freaking out shaking, set alarms off and causing scene in OR room!

so wish me luck!

Still haven't gotten my time for surgery day but they told me to call day before surgery day to get time and whatever I need to do there.

I'm kinda hoping it'll be in afternoon so i can sleep in to makes myself not hungry instead of in morning when I'm super starving, we will see!

Keep eyes on my Blog I'll update again night before surgery and after surgery whenever I'm up to type a blog about surgery day and then few more in between to tell how I'm feeling and pictures to put up too and update again on Feb 12th my activation day!!

The Result!

well i finally got hearing test and she said if i can do it with hearing aid on and if it get too uncomfortable we can stop so i went ahead to do the test and first was word test with no lipreading i didn't get any correct lol and then next was sentence she stopped halfway said 'forget it, you're not getting any diddly squat so let do one with lipreading" haha so we did it and i actually scored 42% with that one with sentence but we didn't do one with word think she forgot but thats ok. Then we talk more about the sensations I'm getting from hearing aid and blah blah then finally she said 'well how does feb 12th, tuesday sounds?' first thing came to my head was "wait, what? whoa sound like I AM candidate.... YES! WHOO" lol and said 'oh yes sounds good, 9 am?" then that was it Im so excited that i am candidate finally! Yay! so next time i'll update is for my pre-op appointment thats in january 9th so watch for it :-)

Audiologist Said

Well I emailed my audiologist to ask few question mainly about my issue with hearing aid and she told me this " Stop using it......I am guessing that you get no benefit from a hearing aid and we will try to test you without using one at all. I will also relay this medical concern to Dr. T (my surgeon)" and I asked if she's sure about it since I thought hearing test with best aided condition is required for insurance to pay and stuff and she said " If there is no noted benefit from hearing aids, the test is still valid. WE just needed to try...and you tried. I don't want you to be uncomfortable, so stop using it as you have tried long enough." So look like trying out hearing aid is more important than hearing test on best aided condition and if surgeon agree with her then I don't know what that mean maybe mean I'm candidate??? Eek I'm getting nervous hope I am. Lol one more week till my appointment with her and don't know if still need do test with ha if surgeon still want to or do test without ha, we'll see.

loaner's hearing aid

its day 4 and I am starting to suspect that i have severe recruitment because as soon as i take my hearing aid off I get this horrible loud tinnitus in my right ear (its the ear i wear hearing aid on) and it imitate the sound i heard right before i turned off the hearing aid and it wont stop and sometimes it'll change sound like pulsating sound and also if i look at someone touch paper my brain makes up noise and makes paper rustling noise i know i didnt hear it cuz that someone didnt even rustle up the paper, stupid brain haha an if man talking it sound like bad stratchy rough voice for man and loud high pitched morse code for women its horrible i hated my hearing aid and to top it all my ear is in pain, it have blister in the inside of ear not ear canal the other part of ear and my ear drum feel like its bruised or something from hearing aid blast the sound oh man i took a break from it for half of the day and whole night hope my ear heal up little bit. I want to guess my speech discrimination for my hearing test whenever it comes (she said tuesday of november 27th but we'll see) i would say 15% now with hearing aid and no lip-reading and with lipreading hmm maybe 35%? Compare to 0% unaided.

My appointment day

Well today was supposed to be the day I get tested for best aided condition and tell me her answer for cochlear implant candidate and finalized the process and go ahead with surgery BUT once she put Oticon Sumo DM on me and *groan* I didn't like way it feel, it feel like hearing aid blow so much pressure in my ear and brain and my right eye keep umm... hard to describe, like moved, disorted for second (only right ear have hearing aid) and makes me dizzy for 1 sec every spoken word lol and after while my eardrum start to get sore and after all day I get used to it TINY bit but still suck. So she decided to postpone and want me wear it for 2 weeks then tested me on best aided condition to get best result to me adjusted to hearing aid. So it sucks cuz I want my answer already heh. That's all up with my appt today

and 5 hours later i heard word "that lawyer" so crystal clear it surprised me from tv i wasnt pay attention to it till i heard it and went 'whoa i heard that" lol crazy. but other word still sound garbled and woman voice if talk too fast for me sound like da da da da da da da its so annoying lol

surgery date

my surgery date is january 15th 2008, pre-op appt is on 9th and post-op appt is on 23rd im so excited and i havent heard from my audiologist about mold yet and my phone broke and its her only email she had to contact me so i sent her with my computer email to see what address i got right lol i dont know which one (com, net, org) eek

Surgeon Says

ok heres what happened, i came in and surgeon and his assisstant brian came in with case of cochlear implant nucleus freedom to show me and let me try it on its HUGE but not that crazy heavy though it just so overwhelming my ear so i told him i want mini bte so he brought out order form and told me i get 2 speech processor so I told him i want my regular bte in pink and the other one is mini bte which i plan on wearing most of time it will be top part pink and bottom part i get 12 different colors! im excited! OH almost forgot, my coil will be brown so it blend in my hair better.
he told me he doubt that hearing aidwill benefit me enough at this level of deafness he told me he will be surprised if it actually does so he went ahead ordering it and sent it to company and told me his assisstant tina isnt in today so have to call her later i think monday she should be in by then to schedule the surgery and i STILL have to do hearing test anyways just to prove my insurance that its medically necessary blah blah blah so whenever I call i will KNOW my surgery date!!!! Im so excited and of course i NEED to not get too excited because what if they cant schedule it before my school start? and also what if Jody the audiologist will actually be reasonable like if i scored under 40% in speech reception test then i get it not on level of loudness i heard you know?
But the most important of them all is i have very very very good chance of being perfect canditate!
i will update blog as soon as i know the date and another post on how my hearing test went and if i get it or not!!!!!

decision on candidacy delayed

sorry everyone I've been busy and forgot to add update about what happened with my appointment that supposed to be final one to determine my candidacy but didnt work out. I copied info from www.alldeaf.com on what i said on here so i didnt leave anything out except some people response after first post only on last post. so here it is

*Well I didn't get confirmation today because she used quick mold as temporary mold for hearing test with best aided condition but as soon she pulled mold out she was like *gasp* your ear canal is so small, hope I can fit tube through this. So she tried and it ripped it completely so she had to redo and put in box to mail to company so that mean I have to wait EVEN longer before getting her decision ugh also she seem airheaded (meaning dumb) and she is pretty pushy about not getting ci and use oticon instead I'm like "no I'm not interested I want ci so focus on that please and just do hearing test as soon as we get mold to see if I am candidate ok?" so that's it for while but she told me to go ahead schedule for surgery and if she decided to say no after we get hearing test then she'll cancel the surgery and if she said yes it'll happen so I don't know, we'll see I'm little worried if she gonna rip me off like if I heard tiny blip and she decided to go for hearing aid instead of ci you know what I mean? Hm just really hope I get it cuz I don't want hear horrible distorted sound and loud static buzzing noise *sigh*
* She is audiologist that work with my surgeon and she's only one so if I want go other audiologist I'll have to go one in baltimore, maryland that's like 3 hours from my house and my surgeon I have right now is only 15 min away. She want to do test on my good ear but I want get ci on my worse ear she doesn't want do test on that ear I don't see the point of that can't I just get hearing aid on good ear and get ci on other one sheesh
* she have my audiogram from 5 months ago by other audiologist who offer me ci when we found out I lost at least 45 decibel of hearing (you know how its different in each frequency so 45 is minimum) so she used that to program oticon and my hearing in good ear is profound plus I want ci on my worse ear (110 decibel loss) and she didn't want to test that one it doesn't makes sensesOk I emailed my surgeon's assisstant about it she told me its ok to do that because she will call and talk to my insurance company for approval right after she pick date and if they didn't approve before the surgery date just delay it and also my hearing test depends on my surgery too so guess its ok as long they get what is needed before surgery happens and she also will forward my email about why hearing aid on only right side not both so we'll see what they said. I wonder what's do they really meant by benefit from hearing aid? Like just simply hear loud enough to hear evironment sound or just the speech discrimination test and sentence recognization if scored whatever is correct?

RESPONSE from ALLDEAF users (thanks for your help!)
* They'd want to know how well you can discriminate speech. I was able to hear a lot of environmental sounds but I got 0 on speech discrimination.
* Yeah that's right. On the ear that I just had implanted, I got 20% speech discrimination without visual cues with my hearing aid. On my first ear, I got 0% with the hearing aid and now have 80-90% with the CI.I believe most centres look for something less than in the range of 40% - 60% speech discrimination. If you are getting good speech discrimination with hearing aids without visual cues, you will likely get turned down by insurance companies.

result of my CT scan is....

its NORMAL! Yay! its huge relief to see my left ear have everything in there nothing missing cuz i want to get this one implanted ofc my right ear is totally normal too :-) one more step to go to get confirmation of my candidacy then scheduled for surgery :-D and i will know on 11th of september then 2 weeks later i meet again to schedule for surgery im so excited!

Finally

My CT scan appointment is tomorrow, finally!!! Wish me luck hope the doctor tell me something just anything so I know whats going on or one tiny bit of good new. I been waiting too long to go by longer without knowing anything at all I hope he said something like "hi amy the result of CT scan is your cochlear look pretty healthy so see you after your hearing trial completes" somehting like that.
I will update tomorrow after the appointment to let you guys know what's up.

Brand War

After a long time researching on all 3 cochlear implant brand. i decided to go for nucleus freedom.

Top 5 Reason:
1) It's most reliable implant out of all brand .
* thats what i wanted cuz I'm really clumsy and accident-prone so i would rather have most reliable implant there is.

2) Have ability to upgrade in future if there is better technology available without needing the re-implantation of internal processor.
* that's what i want because i don't want to worry if i need another surgery if they stop making one that fit one specific implant.

3) The internal implant contain 22 electrodes, soft tip to try preserve the residual hearing and self-curling electrode array to minimize the force that might damage the cochlea or auditory nerves.
* that's also another great thing about that. the AB only contained 16 electrodes and med-el only contain 12 electrodes. and med-el don't have self-curling array and AB don't have enough program in electrode to mimic the most natural sound possible like nucleus does it contain 4 programs.

4) Nucleus have smartsound beam and few other program to makes most of the clarity of hearing and makes it easier for me to listen to conversation and hear what i want to hear and have ability to change programs by pressing the button.
* that's most awesome thing i ever seen cuz i know how annoying some sound are like car engine noise interfering with music or something in radio that i want to hear (when i was hard of hearing with hearing aid) so having those option is what i need to adjust to different listening environments.

5) Nucleus has better appearance and look like hearing aid and have option of going BTE, mini BTE or very small lightweight handheld speech processor.
* i rather better appearance and their design over med-el no doubt but i do like AB color option but i don't like their coil it'll look like shirt button stuck in my head haha so i rather traditional appearance of coil and bte look like hearing aid and if its too bulky for my small ear to handle then i can easily go mini or handheld speech processor no problem and still look appropriate i don't want look like someone from star trek haha.

oh small thing to add is they also has built in telecoil, water-resistance and MRI safe up to 1.3 Tesla. med-el only can go up to 0.6 and AB go up to 0.3 Tesla.

brain function

Left hemisphere
Language

Math

Logic

Reasoning

Right hemisphere
Spatial abilities

Face recognition

Visual imagery

Music

In evolutionary terms, lateralization increases the number of different ways the brain can respond to its environment in order to improve chances for survival.
In as many as 90% or more right-handers, the left hemisphere accomplishes most language processing functions. In non-right handers (which include left-handed and ambidextrous people), language functions are far more likely to involve the right hemisphere. There is some evidence that lateralization differs in males and females.
The left hemisphere is the dominant one for right-handed people, due to contralateralization: the left side of the brain controls the right side of the body, and vice versa.

Frontal lobe (pink)
Concerned with reasoning, planning, parts of speech and movement (motor cortex), emotions, and problem-solving.
Includes Broca's area.

Parietal lobe (blue)
Named for the parietal ("wall") bone on the side of the head.
Concerned with perception of stimuli related to touch, pressure, temperature, and pain.

Temporal lobe (green)
Named for the temporal bone at the temple.
Concerned with perception and recognition of auditory stimuli (hearing) and memory (hippocampus).
Includes Wernicke's area.

Occipital lobe (yellow)
Named for the occiput, the protruding bone "at the back of the head."
Concerned with many aspects of vision.

picture of my audiogram

I finally got my newest audiogram from 4 months ago in mail yesterday so i thought i'll post it up from graph i made in paint shop lol so here it is

guess i jinxed myself :-(

*sigh* now my audiologist said she going to have to reschedule appointment since she thought i still have my old hearing aid and she still didnt have my recent audigram so sorry for other post, its not happening.

TOMORROW!!!

YAY! my audiologist said shes available TOMORROW!! so I'm going get my hearing test and start hearing aid trial tmw! tmw! TMW! WHOO HOO! so I'll see her tmw at 7:00 in the morning and it will be 2 hours long so after that i'll let you know how it is and my result with hearing test so yeah I'm excited everything is going so well and i got everything i wanted so far im so happy i never had so many good luck happening before! so wish me luck hope i fail the speech discrimination test so i get cochlear implant haha (i got 0% without hearing aid so it shouldn't be any higher than 50% with it on right?) well we will see what happen tmw :-D i cant wait to see my surgery date I'm THRILLED its like you have no idea how excited i am about this!

hearing aid trial

ok i got email back from my audiologist who will do my hearing test with best aided condition, she told me she dont think she can change date back to sooner than september 6th but she will try her best and she told me i will be doing hearing aid trial for several weeks, i asked her how long is several weeks then she asked me whats my hearing aid history and i told her then she want my recent audigram so i emailed Dr. Teixido the guy who will do the surgery to send her copy and he said ok so maybe she will change plan little bit like cancel the trial or at least makes it shorter? i really hope that ill help her and change the plan!! *cross my fingers* cuz i dont want to wait lol i want surgery now! :-p well i dont know what else to add so i will update when i get CT scan and hearing test on 6th and 11th so wait till 6th and 11th to see 2 new post about what's going on and learn more what will happen next too :-)

awesome news!

hey everybody i went to vocational rehabilition appointment and do usual boring stuff about my beauty school tuition loan stuff. and i asked him to write an letter to my ENT doctor to see if he can speed the CI progress up so i can get it done before my school start. so i got home and i found letter from my doctor to see when next appointment after CT scan and it said 6 weeks so my boyfriend and his mom got into some kind of discussion and got me worried and frustrated that it takes forever so i just sit there being disappointed and hopeless but all suddenly when i went to check my sidekick email an discover that i got email from my doctor that i emailed about week ago that i forgot about requesting him if its possible to speed things up and be done before december, anyways he replied and said YES he can WHOO HOO but of course i need not to let my hope get to high because there still 2 factor that have possibility of preventing me from getting the cochear implant is hearing test with loaned hearing aid to give it to my insurance to verify that hearing aid does not work for me in order to get them to pay for it. and CT scan/MRI scan i might have deformed cochlea (i highly doubt it because i used to be hard of hearing ith 50 db loss until 4 years ago i lost it all as i stated in other post) so im getting excited and slightly nervous i cant help it but jason my boyfriend keep telling me not to get too excited because theres still few things that could stop it from being possiblity of making my dream to come true but im still excited and i have good feeling that it all will work out just fine :-D it would be awesome if i can do surgery next month! but i have feeling i'll have to wait till novmber because i just got medicare insurance yesterday which i dont know much about but i also have 2 other insurance Medicaid and delaware physican care too so we will see what happen! oh and my doctor also told me i can email my audiologist if she can change date sooner than september 6th instead of on 11th so my doctor can get result on same day and talk to me about it and get some idea of if i have good chance of getting it i dont know if i get MRI or balance test we will see what happen i will let yu know as soon as i get replied in email from my audiologist :-)

In the canditacy progress

hello everybody my name is Amy and I'm 19 years old i will turn 20 this November. i was born deaf and my right ear hearing loss was 50 decibels loss and left was 90 and it stay that way until recently about 4 years ago my hearing aid stopped working for me i thought my hearing aid was broken so i didnt wear it for 4 years and 4 months ago i decided i want get new hearing aid so i went in and took hearing test and it was boring and i heard nothing so i asked if machine is on and working fine and she said yes it is fine i just cant hear anything yet so i thought she was slow at it or something and finally i heard beep and few minutes with few beep then stopped and same thing with other ear and it was strange so i came out and looked at my audiogram sheet and i was SHOCKED to see that my hearing loss fell to 100 db on both hear so im suddenly profound deaf and i was like 'so is that why i couldnt hear anything with hearing aid?" and she said yes and talk to me about powerful hearing aid but even at that range of hearing loss i have right now it wont do for me that well because i want to hear speech not just sound so she suggested me to think about cochlear implant so i said "yes i heard all about it from my friends" and she also told me she have feeling that im perfect canditate for cochlear implant so i decided to went aghead with evaluation progress and she sent me to other specialist ENT ear, nost, throat to go further discussing about cochlear implant and i really want one so he called other audiologist to makes appointment with CT scan on september 6th or something i dont remember i wrote it down on memo board lol and 45 minutes after CT scan i have appointment with my ENT i think to talk about result not sure and then few days later (11th) is my appointment to take another hearing test but with loaned hearing aid to prove that it doesnt work for me so my insurance will pay for it (i think its just for one day only not trial but we'll see) and then i dont know when is my next appointment after meeting with audiologist with hearing test im sure it'll be balance and MRI test or whatever there is for me to get the cochlear implant its taking forever it sucks i only got 2 appointment so far in 4 months! ugh i hope my ENT will speed things up and do surgery before december because thats when i start beauty school and my school do not have vacation or days off longer than 2 days for 11 months straight so it will suck really bad if i cant get it for a year.
anyways other than my progress on canditacy for surgery. heres mini biography about myself. I was born deaf and im only deaf on record in 600 years (genealogy book my grandma has) so i have NO clue how im deaf its definately not genetics haha but i did born with umbilical cord around my neck and turned blue for few minutes maybe that somehow causes my hearing loss?? Anyways and my parents found out that im deaf at around 2 and half years old because i didnt respond to them calling my name and my mom tried pounding on cooking pan and i didnt respond and she come close to me from behind and yelled Amy! and i didnt respond and she somp on floor for vibration and i look around and she got worried so took me to doctor and told my parents that im deaf and my parents were shocked and dont know what to do so they talk to specialist and he actually asked my mom if she want to give me up to adoption my mom was so pissed and went out of door said 'this is my daughter' and decided to put hearing aid on me and sent me to mainstream school with special deaf program that have about 10 other kids with me in classes for most part and sometimes in some class with hearing kids till high school we all start going to hearing classroom and only study hall with deaf teacher so it was nice. im very fluent in ASL and i can speak a little, mostly color, numbers, thank you and etc common word. i used to speak fluently when i was 8 but i was painfully shy so i never social with hearing people or use my voice so that why i only can say few things now. So number one reason i want CI is for my own safety it bother me alot that i could not hear the fire alarm at all eve if m standing under it and my bf's sister's baby cried hard for little while and i had no idea till they came in room and got mad at me i felt soooo bad that i cant hear baby cry and i also want to hear emergency vehicle from behind if need to pass me and i miss listening to people talking and music and lovely sound like rainfall, bird chirping and wind whistling. well i better shut up im talking too much haha i'll update when i get my CT scan done and hearing test too.